How to Declare May as Fanconi Anemia Month in Your State

Feb 2nd, 2022

What is a proclamation?

An official announcement, in this case by a government official, to the public about an important issue, event, or action.

Why is it important?

Raising awareness at the government level and among the public may lead to…
This process basically requires that FA community members submit an email and/or letter to their local government seeking a proclamation on behalf of FARF for FA awareness. Some states provide an online application form instead. We have drafted a sample letter for you!

• Increased interest in FA research
• Early and more accurate diagnoses of FA
• Awareness of existing clinical trials
• Networking opportunities between people impacted by FA and government officials
• Newsworthy stories for local news and communications outlets
• Provides people impacted by FA with the opportunity to share their story with new and local audiences
• A simple way to get involved with advocacy work
• It can be used for fundraising efforts

How do I do it?

When is the deadline?

The deadline to submit the proclamation request for most states is March 1^st, 2022, or 4-6 weeks in advance of its implementation (May 2022 – FA Awareness Month). Some states require that requests be submitted 6-8 weeks or 60 days in advance. In most states a request may be submitted no more than 6 months in advance (some 3 months). For a timeline specific to your state, please visit your state government website.

Important details:

• Some states require a letter of significance with the proclamation
• Majority of states require an online form to be filled out
• Some require an email to request a proclamation form
• Some require the proclamation draft with a detailed email about why this proclamation is important (describe your story and see bullet points above under “Why this is important”)
• Some states require the individual requesting a proclamation to be part of a statewide organization and to be authorized to act on the organization’s behalf (being registered with FARF should be sufficient)
• Most requests need to come from within the state (legal resident of the state)
• Coordinated efforts are needed among those who’d like to request a proclamation so that there is no more than one concurrent proclamation request each year in each state (most states will only allow one request per organization)
• A proclamation is not automatically renewed every year and therefore can be requested once per year
• Proclamations can also be made at a city/county level (visit your city council or mayor’s website for more information)

FARF’s Mission Statement for some online forms:

“Our mission is to find better treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide.”

Brief FARF background info (available on FARF website):

The Fanconi Anemia Research Fund (FARF) is the world leader in advancing research for better treatments and a cure for Fanconi anemia. Founded in 1989 by parents Lynn and David Frohnmayer, FARF has supported more than 250 grants to more than 170 investigators worldwide. Over the last 33 years, our outstanding donors have enabled us to fund $26 million in research grants.

Suggestion: If state accepts proclamation, you may consider reaching out to local media outlets, and disperse the proclamation on social media to further increase awareness (Note: You may need explicit written permission from governor’s office to republish official proclamation online).